Anxiety

PDA is a part of the autistic spectrum that is currently not recognised as a stand-alone diagnosis in the county of Worcestershire where I live, there seems to have recently been some diagnoses given of ‘Autism with a demand avoidant profile.’ It wasn’t until I came across information on PDA from the PDA Society via my networking with other SEND bloggers that I found out about PDA and realised that we’ve been living with it every day with our eldest daughter.

As time as gone on and I’m researched more regarding PDA, I have come to realise that I too have certain traits, although as an adult they are not as recognisable as my daughter’s traits, as over time I’ve learnt how to cope and train myself to deal with everyday demands, even though I had no idea that these feelings, in fact, had a name. One of the main traits I recognised in myself was the strange feeling I get if someone tells me to do something, especially if it comes across in quite an aggressive manner or someone tells me I’ve done something wrong and I wasn’t sure of the right way to do something. I get this awkward ache feeling at the pit of my stomach, I will hold it in as I want to appear ‘normal,’ on the surface but inside I’m screaming, I’d very much like to exit the situation and run away, but I can’t. I often hold these frustrations in until I get home, usually by holding in tears and letting it out, or in fact feelings of anger. On the other hand, if there’s something that I really want to do, such as make a hot drink for my partner and I haven’t been asked, or told to so, I get a better feeling of ‘I like doing this.’ My eldest daughter, Lou, is exactly the same as this, we have to carefully word questions and instructions in insure it isn’t perceived as a ‘demand,’ such as using a statement like “arms in your coat,” in a positive tone of voice, rather than “put your coat on.” As she will usually respond to this demand by throwing the coat on the floor and a refusal to put it on.

For this first post in the PDA series I am looking at explaining why people on the autistic spectrum may say things we don’t mean to someone who has opposing views, or someone that has just ‘told us off,’ or given us a ‘direct demand.’ It is important to remember that individuals with PDA are highly anxious and the anxiety they are feeling may come out as anger, frustration or even aggression, due to the feeling of being out of control of a certain situation. For myself, I really don’t like confrontations, I don’t like raised voices and I will do all I can to avoid confrontational situations, even to the degree where I’ve agreed with things I don’t really agree with to avoid a varying and opposing point of view.

Where individuals on the autistic spectrum themselves described what a ‘meltdown’ actually feels like. When I read the following statement, I could 100% relate:

“I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone.”

This keeps happening to me now, even as an adult and it is the main cause of my anxieties, particularly social anxiety, as I simply cannot remember what I’ve said to people in meltdown mode, as I haven’t even been aware until after the meltdown that it was in fact a meltdown that I’ve been experiencing! This is such a complex thing for me to understand about myself and therefore to try and get others around me to understand is one of my biggest challenges to date. The self-awareness that I now have with this has taught me to make people aware that it is best to actually ignore me if I’m starting to say horrible things, if I’m in a stressful situation or if being challenged about something, such as what I may have written on social media. Unfortunately, some people have pressed me for answers or ‘had a go’ at me after something I said when I was mid-meltdown and there is no going back, I will say stuff that may have been floating around in my head or thoughts that I have deep down but ordinarily wouldn’t say in public, but lose all sense of filter during a meltdown and it all just comes flowing out and I simply can’t stop it.

The guilt that comes after these occurrences is intense, this time last year, after occurrences where I’d said something I really didn’t mean to I would hide myself away and be too afraid to go out where I may see the people who I have ‘upset.’ The best way forward after an occurrence like this is to just forget it and carry on and not become absorbed in analysing what shouldn’t have been said as it will just take over and it becomes very difficult to get on with everyday tasks. These occurrences are just like when Lou, will come out with some hurtful words during a meltdown and as a parent, I have to just let it all go over the top of my head. I often get responses such as “you’re a really bad mummy,” “You are so stupid,” and “I think you’re a terrible mother,” which for a child of not quite 6, is quite complex. At first these sorts of statements hurt me emotionally but after researching, I now let it go over the top of my head and don’t respond as I know it will cause even more upset and cause an arguments, which is what I desperately tell other people to do even though I’m an adult, when I say things like: “please don’t keep pressuring me as I don’t want to talk about this right now,” and “Please stop as I don’t want to say anything hurtful.”

I do hope that this gives a bit of insight into the reasons behind this trait that can be seen by individuals with PDA, or indeed any person on the autistic spectrum experiencing a meltdown.

I also watched an amazing webinar by Operation Diversity where Dr Jody Eaton (Clinical Psychologist) explains about PDA in children. She mentioned that often children cannot remember what they have said or done during a meltdown. This webinar can be found here:

Both of which explain the main features or ‘traits’ of PDA, so for PDA Action day (15/05/17) I decided to share how PDA looks in our household.

Avoiding negative phrases and ‘demands.’

The worst response I can give when my daughter, Lou (5) asks me a question is “No.” In our household saying “No” outright usually results in objects being thrown, shouting, screaming, hitting, kicking and could result in a total meltdown.

From researching PDA over the past year, I realise how important it is to think carefully about how we word every phrase for our daughter, it’s taken so long to get used to and you have be quick-thinking and very often think ‘outside the box.’ Lou has a lot of obsessions around food, she repeatedly states to us that she’s hungry, she never feels full. If Lou asks for something to eat and she’s already had plenty to eat only minutes before, we simply cannot reply “No,” nor “not now,” as I discussed previously, this will result in a great deal of anger and frustration and things get thrown! We have to use a visual chart where we point to the meal and time of day, Lou removes the snack card and we point to the next meal, e.g lunch and say: “next time we have food is lunchtime.” We use minimal language and often have to repeat the same words to aid her understanding. Not saying “No” is a very difficult thing to do! Having to think of what to say before you say it every time takes a great deal of my ‘brain energy!’

Lou will avoid any demand put onto her, getting her dressed in the mornings often takes both myself and her Daddy, we cannot simply say “get dressed,” as the answer will always be “no,” or she will shout replies back such as: “No you silly Poo,” or “you’re a really silly woman,” she has even told me: “You’re an awful Mother,” (I have no idea where she’s heard this phrase!) It took me a while to get used to these ‘come-backs,’ but I do have to let these ‘outbursts’ go over the top of my head to avoid ‘fuelling her fire’ even more. We have to use choices for absolutely everything:

“Trousers or T-Shirt” this often still results in “No, I’m not getting dressed today,” when we have to give the choice of:

“You do it or Mummy/Daddy do it.”

It can often take over 30 mins for Lou to be fully dressed as she also likes to run around the house to see if we can catch her to get dressed!

This is also the same when it comes to tidying up, we have to give a lot of praise when Lou does tidy up and in the last month I can only remember this happening once, we’ve modelling tidying, but the demand of doing it is just too much for Lou to cope with. We use visuals and ‘Sign-a-Long’ for ‘tidying,’ and other daily routines. These sometimes work with Lou, but also sometimes don’t! We also have to be careful with wording and giving praise as Lou doesn’t cope very well with actually receiving praise, will not know how to handle it and often do something like throw all of the toys around the room in response.

Lou struggles with sudden or unexpected changes to her routine, even as an adult I am exactly the same! We recently had to leave our holiday 3 days early as Lou had got chicken pox, we had to get the train home 3 days early and we’d planned to take both girls to a theme park for the day, we had previously prepared Lou for this day out with talking through it and visuals of what would happen. When we had to tell her that she couldn’t go to the theme park as she had chicken pox it was like a volcano had erupted! Lou shouted all the way walking to the train station, “adventure park Mummy,” and repeated it and then would say things such as “this place is stupid,” “silly train, silly place.” She also refused to move and sat on the pavement in the middle of the town, in protest! This made me so disappointed for Lou, and the change in the plans had set me off and therefore Lou’s Daddy had to deal with us both all the way to the train station! It took both myself and Lou a good hour or so to finally calm down and adapt to the changes.

I find it confusing as to how Lou cannot process demands yet she places a lot of demands onto myself as her mother and main care giver, and also her dad. She will say things like “get my snack now,” “I said get me it NOW.” I found this difficult to cope with at first but after reading up on PDA I realise that:

“People with Pathological Demand Avoidance (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.”

I hadn’t pieced together that the anger and frustration I see in Lou is actually all down to anxiety and this manifests more when she doesn’t feel in control of situations.

There are so many more things I could say about PDA, I’m still learning more every day. It’s exhausting and I feel it’s quite catastrophic, but what we have to do is take positive steps to ensure that our daughter is helped to cope in the best way possible.

My hope is that PDA does become more widely recognised as I hear so many different experiences where PDA is recognised in certain counties in the UK and yet in others professionals refuse to recognise it.

PDA certainly does exist, and we live it everyday! Brilliant sources of information on PDA:

This post was written last year, I’ve added some details for Maternal Mental Health Awareness.

Anxiety has been with me since I can remember, I started biting my nails at 3 years old and can clearly remember points in my childhood where I feel most stressed about certain things, down to even my first days at starting a new school, even the smells and sounds I experienced and how nervous it made me feel. I have always tried to be everyone’s friend to keep everyone happy and to avoid disagreements and confrontations, but over the years this has become increasingly harder to do, since I’ve had children I’ve had to become braver to say what I think and really feel, especially if its related to their safety or best interests.
The real me is very hard to get along with! I’ve had, for the first time in my life, had experiences in the past year where people have clearly expressed that they don’t like me, or what I believe in and this has been very difficult for me to accept, for the first time in my life I have been called “nasty.” My anxiety is made worse by the thought that people are talking about me behind my back and making disapproving comments. I wish I just simply didn’t care! I often find that people do not openly ask me about why I choose to do certain actions, often ending in them making the wrong assumptions and not receiving the clear picture. I’ve always described myself as a ‘pushover’ and if someone said “jump” I’d say “how high?!” I have always been easy to influence and manipulate. I’d go along with things and agree, even if deep down, I didn’t truly feel that it was necessarily a good thing to do. And these weren’t only small decisions, I’m talking about extremely important, life changing decisions. For the first time in my life I’ve had to make decisions without outside influences and therefore if these decisions turn out to be the wrong ones, I only have myself to blame!

Since my second child was born in March 2015, my anxiety heightened, I was recovering from a caesarean section and living in a first floor flat at the time, I struggled to get down the stairs to the flat with a newborn in a car seat and a very lively 3-year-old who frequently ran off. Plus my eldest daughter felt deep jealously towards her new baby sister even before she was born. I was dealing with a lot of emotions after having a new baby and sleep-less nights again and at the same time battling for my daughter’s additional needs to be recognised. I was encouraged to go and seek advice from my GP in April 2015 and it took until August to actually find the time to go and see the GP on my own. I was then placed on medication to help with the anxiety.

I’m always saying that I feel that I should be able to cope better with my daughter’s additional needs, especially the behaviour she displays, there are plenty of parents out there who are coping far better, but this is me, and unfortunately, I do have a lower coping threshold than some. I am often saying that “this is me, I simply cannot change who I am” unfortunately I can’t wave a magic wand and make myself cope with things better.

I have been so grateful to recently talk to someone else, that for the first time in my life, that feels the same as I do. It was a massive relief to talk to someone who can understand what I’m going through.
With my current anxiety demons to fight, I want to explain why anxiety isn’t my friend!
Anxiety you’re not my friend…

– You make me worry about absolutely everything, even the smallest things.
– You make my chest tight and I feel so helpless and it’s difficult to make things better.
– You make me paranoid, that people are dissing me behind my back.
– You make me over-think and over-analyse everything and everything!
– You make me focus on one thing and it’s difficult for me to think about anything else.
– You make me worry about going into public places, especially if someone is there that doesn’t like me!
– You make me on edge and my daughter plays on that as she’s so hypersensitive to my mood.
– You make me sick of the sound of my own voice.
– You make me question my every action.

– You make me feel that I always get things wrong,

– You even make me feel like I’m a bad mum.

– Sometimes you make me feel claustrophobic in my own home, other times you make me feel like I can’t even go out and even the school runs a struggle.

Anxiety, you’ve been there throughout most of my life…

To this day you are still ‘hanging around’

… you’re definitely not my friend!

But…

… there is a light at the end of the tunnel,

If I talk about it and don’t bottle it up!

N. Perrins.

This time last year my GP referred me to the ‘Worcestershire Healthy Minds.’

Here I completed a questionnaire and then a follow-up phone call where I was matched with the appropriate service to help support the issues at that time.

Recently I have used the online service for self-referral to this service, where it may be reading support guides, counselling or Cognitive Behaviour Therapy (CBT.) It helps to talk to someone who isn’t involved with the family or the situation.

There was once a time where I didn’t discuss these type of things, I felt ashamed and alone and that I was at fault. I have come to realise, especially over the last year, that it’s necessary to talk about mental health and to #endthestigma
Thanks for reading 🙂

My own design which describes my journey. The butterfly is a symbol of peace and freedom to me. I’d love a Semi-Colon butterfly tattoo (when I’ve found out if I’m allergic to the dye.)

I usually prefer to write about Lou’s journey, not my own.

But on days like today I remember back to 2008/9 when I had, what I now describe as my ‘tricky time.’ I prefer to write all of my memories from this time to my online books. I’ve always carried a feeling of being ashamed of suffering a nervous breakdown, but what I’ve learnt over time is that it happened and I’m here to tell the story and therefore:

“My story isn’t over yet!”

(Source: Slogan from Semi-Colon project.)

I was homesick, 3 hours from where I grew up, I hadn’t really branched out to make a lot of new friends outside of where I worked as I didn’t feel that many people ‘got’ me. I had a bad reaction to some anti depressants and it all went a bit down hill from there. I remember feeling so very scared because I didn’t feel in control of my own body and I couldn’t trust anyone around me due to the paranoia I was feeling at that time. I have this tremendous pang of guilty because people did get hurt at this time, lives were changed down to me but it’s not like I chose for the black cloud to descend on me 😦

I could have stayed feeling guilty forever, I could have let it consume me, but I now take the approach that:

“Everything happens for a reason.”

And I wouldn’t be on the path I am today if these events hadn’t happened. I had to go through a tremendously rubbish path to enable me to learn about myself and become the strong person that I am today.

This event in my life sparked some (still mainly) unanswered questions about myself, as a child and also an an adult. I suffered brain trauma at birth, could this have any effects on my mental health? (Another topic for my ongoing research,) although no one is to ‘blame’ all I can do is learn about myself and how I can go about to ensure I can function. I have questions about:

– Depression

– Anxiety – (in particular, social anxiety.)

– OCD tenancies

– Undiagnosed Autism? Particularly Asperger’s Syndrome.

– Bi Polar? A huge question mark as I no longer have ‘high’ episodes, more on an even keel.

– Highly Sensitive Person (HSP.) As suggested by a great counsellor I saw.

…What I have got are 2 beautiful children and a partner that understands me, for me, like no other person has (except my mum!) Ever! I’m now back, where I feel that I belong, back where I grew up and in familiar terratory. With people close by that would spot straight away if I didn’t seem right. My issues have only meant that I’ve ever had a few weeks away from working, I’ve been able to do a job that I so desperately love, that allows me to forget about my worries, for over 12 years. One of my biggest worries is that my issues would stop my future career prospects as my fear was that people would ‘think’ that I wasn’t suitable to work with children, but it has never stopped me, it’s one of the elements where I tell myself “keep going, your good at it!” When I run my music sessions currently, and I see the children are smiling and enjoying themselves I think to myself “this is what I was born to do.”

I do worry that I could have future ‘occurance’ but I desperately try not to dwell on it, I worry that my daughter will suffer the same worries as a teenager and throughout stressful times in life. But I can be the one who can spot her troubles and get the appropriate help if needed.

Mental illness needs to be talked about, for years it felt like my ‘dirty secret’ I was so worried and moulded on other people’s impressions of me. What are people with a mental illness supposed to act like? Do people expect me to have a massive meltdown in the middle of a public place?! Do people expect me to sit and cry all day? In fact I find it very difficult to cry, I have only cried twice in the past month!

We need to talk to other people who are going through, or have been through the same experiences, I have a few friends and my sister who I could be completely honest with about how I’m feeling and can talk openly about my experiences, I recently chatted to one friend for 3 hours about how we perceive the world and people in public, and realised that it’s not just me who thinks a certain way! Which was a massive relief for me! I’ve only had one experience so far, of sharing my problems, (regarding a view I have on a particularly sensitive subject,) where this person really couldn’t understand me, and later referred to me as “ungrateful” amd “selfish,” (needless-to-say, I no longer associate with this person!)

This was one of my first original quotes that I produced after starting my Blog in March 2016. Blogging to me is fantastic therapy. There are so many thoughts going around in my head, it’s a relief to get them out and onto the Blog.

One of my biggest hurdles was plucking up the courage to tell my GP how I was really feeling, the GP’s can only really help if you open up, something that I’ve learnt over time. I was so worried about being dismissed or being told that I was “making it all up.” But thankfully, this has never happened. If I have a problem I write it down and hand it to my GP, for me, I am the sort of person who finds it easier to write things down, rather than to make eye contact on a particular sensitive topic. If you, or anyone you know, are feeling that you need to talk to your GP, my advice would be to write it all down and post or take it in personally.

I prefer to write posts about my children, I don’t feel comfortable writing about myself. But this Blog is part of my therapy and allowing myself to let go of certain thoughts that constantly run through my head. For the first time since March, when I started my Blog, I’ve doubted if it’s the right thing to do, but when I’ve helped other’s in a similar situation by sharing my experiences it’s so rewarding and by having my posts shared on Facebook groups and websites such as Family Fund, Learning SPACE and SMILE centre, certainly make me feel like I must be doing something right. I have such a high functioning brain, I always need to feel like I’m learning something and as I’m not at work at the moment, the research I do and the experiences I write help to keep my brain active.

Anxiety has been with me since I can remember, I started biting my nails at 3 years old and can clearly remember points in my childhood where I feel most stressed about certain things, down to even my first days at starting a new school, even the smells and sounds I experienced and how nervous it made me feel. I have always tried to be everyone’s friend to keep everyone happy and to avoid disagreements and confrontations, but over the years this has become increasingly harder to do, since I’ve had children I’ve had to become braver to say what I think and really feel, especially if its related to their safety or best interests. I am a strange person as I describe myself! The real me is very hard to get along with! I’ve had, for the first time in my life, had experiences in the past year where people have clearly expressed that they don’t like me, or what I believe in and this has been very difficult for me to accept, for the first time in my life I have been called “nasty.” My anxiety is made worse by the thought that people are talking about me behind my back and making disapproving comments. I wish I just simply didn’t care! I often find that people do not openly ask me about why I choose to do certain actions, often ending in them making the wrong assumptions and not receiving the clear picture. I’ve always described myself as a ‘pushover’ and if someone said “jump” I’d say “how high?!” I have always been easy to influence and manipulate. I’d go along with things and agree, even if deep down, I didn’t truly feel that it was necessarily a good thing to do. And these weren’t only small decisions, I’m talking about extremely important, life changing decisions. For the first time in my life I’ve had to make decisions without outside influences and therefore if these decisions turn out to be the wrong ones, I only have myself to blame!

How I have dealt with this over the past year is to not associate with the individuals who can’t see the journey that we’re going through with Lou, and how much strain it puts on our family life, even though she cannot help it at all. I may make crazy decisions or say strange things as my head is often focused on Lou. It is also my role as a parent to protect both of my children from influences that I deem to not be appropriate role models, and again I’m left to look like the one who’s in the wrong but I am just doing my job as a mum. Especially because Lou is such an impressionable and switched on child who listens and takes everything in and then repeats it!

I’m always saying that I feel that I should be able to cope better with Lou’s additional needs, especially the behaviour she displays, there are plenty of parents out there who are coping far better, but this is me, and unfortunately I do have a lower coping threshold than some. I am often saying that “this is me, I simply cannot change who I am” unfortunately I can’t wave a magic wand and make myself cope with things better.

I have been so greatful to recently talk to someone else, that for the first time in my life, that feels the same as I do. It was a massive relief to talk to someone who can understand what I’m going through.